TOUCHED BY LYME: IDSA learns what it means to “go viral” on Facebook
IDSA gets an earful from Lyme patients on the organization’s Facebook page. But will they pay any attention?
Author | LymeDisease.org
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LYMEPOLICYWONK: And, the Number Is? 5,200 Responses! IDSA Guidelines and Patient Preference Survey
Let me thank everyone who responded to the Patient Preferences Survey! We have drawn over 5,200 responses, which is just simply fabulous. We will now start the process of reviewing the responses with an eye toward publication of the results. Our last survey was published in Health Policy, a widely respected peer reviewed journal. Those results now help inform the base of knowledge of the access to care problems that Lyme patients face. Our goal with these surveys is to open the space for conversations in the public health arena about what is really going on with Lyme patients from their perspective. We are trying to give voice to the patient community, which is all to often completely ignored in conversations about Lyme disease. Your willingness to participate in these surveys allows us to do that. So hats off to you for being so vocal and letting us know your views.
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TOUCHED BY LYME: (book review) Thalia "growing stronger" after Lyme
Entertainment superstar Thalia talks about having Lyme disease in her recent memoir “Growing Stronger.”
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TOUCHED BY LYME: Her son’s “nightmare of illness” led her to path of helping others heal from Lyme
Ann Corson, MD, one of the speakers at LymeDisease.org’s Jan. 22 Lyme patient conference in San Francisco, knows what the parents of her young Lyme patients go through. Back in 2001, she was working as a family practice physician in Chester County, PA, when her son was bitten by a tick—and their whole world changed.
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LYMEPOLICYWONK: Speak Up Now! IDSA Lyme Guidelines And Patient Viewpoints Survey Ends January 1. . .
Since we launched this survey in early October, we have drawn over 4,800 responses. The survey will end on January 1 so I encourage those of you who have not yet responded to take the time to do so. According to the Institute of Medicine, guideline developers must consider patient values and preferences to be considered trustworthy. This survey aims to find out what you think is important about treatment options, choices, risks and benefits. Respond to the survey and remind the IDSA that patient values are central to treatment guidelines!
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TOUCHED BY LYME: "Night before Lyme Christmas"
A holiday poem by Bob Morgenstern
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LYMEPOLICYWONK: SIGN THE PETITION TO REMOVE THE IDSA GUIDELINES FROM THE NGC!
Medical treatment guidelines are tremendously important in determining your treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC), which is part of the US Department of Health and Human Services. It’s the government’s way of providing updated information about different diseases to health care professionals. NGC’s own rules require that listed guidelines be updated every 5 years. The Infectious Diseases Society of America has not revised its controversial Lyme disease guidelines for more than 5 years. Nevertheless, the NGC recently permitted the IDSA to continue listing the Lyme guidelines without updating them.
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LYMEPOLICYWONK: CBS Lyme Story, A Tale of Conflicts of Interest & Bias
A CBS news story on Lyme disease has patients concerned about the misinformation that it promotes. On top of that, the story does not have the level of journalistic integrity that serious topics should have. For one thing, there is the title: “Lies and Truths”. Lies are statements that are known to be false that are told to intentionally deceive another person. Lies are not issues that are matters of scientific debate. When a science article title uses the word “Lies”, it tells the reader that it is not about science. Second, the article is a single source article. This means unlike most journalism and particularly good science journalism, there is no attempt to present different sides of the issue. One side, in fact, one person’s opinion is put forth as uncontested “truth” with no counterpoint. Third, the piece is edited by the Orly Avitzur, M.D., M.B.A., Editor-in-Chief of the American Academy of Neurology (AAN). You may recall that the AAN was part of the antitrust investigation by the Connecticut Attorney General into the Lyme guideline development process by the Infectious Diseases Society of America. The reason?
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TOUCHED BY LYME: Those ticks on Tilden Park’s picnic tables
Researchers looking for nymphal ticks at this prominent northern California destination found them in unexpected places, including on and underneath wooden picnic tables and benches.
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TOUCHED BY LYME: Working to get Lyme disease off the "most censored" list
When Lyme patient/advocate Liz Karkoff, of Tarrytown, NY, recently read that Lyme is one of the “Top 25” most censored news stories of 2011, she decided to do something to change that. She contacted a local reporter, who published a story about her Lyme experience and the difficulties of getting properly diagnosed. She encourages other people in small towns to do the same.
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